Whether you are an OT, PT or some other healthcare provider, you need to be aware that pain is pain. My pain is real, I don’t make it up. I want medical professionals to know about pain that involves the whole person—it’s not just how’s my belly feeling after surgery, especially when I have other circumstances causing different pain issues all at the same time.

I don’t look or act like I’m 77. That’s my choice. I don’t give in to the pain because my medical team supports me to have a positive quality of life. My frustration is often because I am not physically able to help with my grand daughter, Mariah. Every year there are more things I can no longer do.

The time in the day I feel the most pain is when I go to bed at night. There is often so much pain I can’t sleep. I manage it by walking around every few hours. During the day I manage the pain because I’m busy—not letting myself think about it. Crocheting, reading, genealogy, games on the computer. All of that helps me get by. I want to be able to help people, but my body wants to be in bed.

The pain scale of 0 to 10 is often misleading. Sometimes my pain level is much more than 10, because it is a combination of several unrelated causes of pain that I am experiencing all at the same time. My pain is very complex but it is very real and often difficult to explain.

I make these prayer shawls for people in my church. Sometimes people just need some comfort. This is a way I can contribute and use my time to add comfort to someone else’s life.

I have a good relationship with my medical team. I did have one problem with a surgeon who was on call, and not part of my usual team. At one point in my treatment I heard him tell a nurse that he thought “I just liked the feel of pain meds and it was really all in my head”. He is no longer a part of my team of professional care providers.

Heal/Tell is a series of narrative and portraits by Cathy Plourde, Director of Add Verb Productions and Holly Haywood of the University of New England.

Please leave a comment – do you live with chronic pain? What helps you?

The following is the first in a three part series that includes portraits in prose, photography and video. Please meet Robert, an extraordinary person living with pain.

Looking Outward, and Moving Forward: Finding Purpose Within the Cycle of Chronic Pain

By Tyler R. Vunk

Although an aggressive pool of young soldiers had competed against him for the opening, Robert was, at fifty, the most qualified person for the job. Having placed in the top two percent of all Marine Patrol applicants, the experienced SEAL was in excellent standing going into the final round of the officer examination. Yet, after his Achilles tendon was severed during an exercise, Robert was forced to wear a leg cast, which disqualified him from beginning the remaining part of the application process: the distance run. Showing no bias, the Marine Patrol allotted him thirty days to heal before being retested—a seemingly impossible feat, as the man’s attending surgeon had prescribed a six-month recovery period—but Robert was neither willing nor able to capitulate. With five herniated disks, a fractured spine, and scores of abdominal injuries, the Navy SEAL had learned to fortify his mind with an impermeability that denied access to most human frailties—especially pain, as its avoidance had been crucial for his training, and, above all else, survival. He cut off his own leg cast, and continued on with a conditioning regimen, dragging his damaged limb over the unforgiving pavement of his neighborhood, refusing to give in to the excruciating torment of his injury. When the thirty-day period was over, Robert, in front of a panel of ranking officers, took to the track, and went about the task before him. “I was trained that my mind was stronger than the shell,” recalls the retired SEAL, “and I still feel that it’s true, even today.” The man met his qualifying time, both earning the opportunity he had set out to obtain, and a respect that comes not from forced stoicism, but an innate will.

While Robert’s career with the United States Navy was both long and accomplished, the physical and emotional demands placed upon him during his years of service would eventually become too intrusive to ignore. One morning, after returning home from a rigorous workout at a local gym, the retired SEAL soon discovered that he was physically unable to get himself out from the passenger side of his car. Robert’s normal level of pain skyrocketed. Parked in his driveway, alone with agony, he tried to convince himself, as he always had, that the pain he was experiencing was an unimportant detail—one that could be easily controlled if he merely focused hard enough. “You can do this,” he remembers saying to himself, “you just have to get your legs out of the car…but I couldn’t.” Robert, the same man who had navigated through the unspeakable hardships as a SEAL stationed in the Middle East, and braved the dangers of drop points riddled with vehement floods and typhoons—the same unbreakable machine that had gone on countless diving missions without concern for his wellbeing—was forced to do something that went against everything he had come to associate with strength: he asked for help. Having exhausted his mind’s influence over his corporeal existence, the man called out to his wife, allowing her to literally pull his lower half out of the car, freeing him to stand upright, and walk on his own.

The events of that day transformed Robert’s life in unthinkable ways. Up until his late forties, the retired SEAL had never made any allowances for pain—even the word, as Robert once admitted, “wasn’t in my vocabulary.” Now at fifty-eight years old, he experiences chronic pain throughout his entire body on a daily basis. Coming to terms with his limitations has been an ongoing process; yet, despite the decline of his physical capabilities, he refuses to live a sedentary life, electing to modify the intensity of his activities to levels that will not cause him any further harm. As for the management of his chronic pain, Robert has fought hard to gather the resources he now has at his disposal. While the veteran is grateful to have found a few health care professionals that he can trust for guidance and support, his interactions with the medical community have not been very positive; often riddled with disconcerting conversations and insensitive physicians, the majority of services provided to him have not been useful, as many of them only offer higher levels of pharmaceutical intervention—an approach that Robert would like to avoid as much as possible. A firm believer that lucidity of the mind is integral for sustaining the body, he relies upon a combination of different methods to manage his chronic pain symptoms—a “synergist approach,” as he describes it—that includes chiropractic alignment, as well as mild exercise.

While physical pain continues to negatively impact the quality of his life, Robert has expressed that his struggle with Post Traumatic Stress Disorder (P.T.S.D.) has been the most difficult part of his health to treat. After conventional attempts to navigate the emotional tolls of his daily existence failed to alleviate his suffering, he began to readjust his focus—a combination of challenging himself to center his awareness upon the needs of others, and allowing the outside environment to unfold in whatever way it chooses. Through the twists and turns of his introspective process, the retired Navy SEAL found equine therapy. Often unrecognized by the medical community, the healing modality has provided some relief from the unrelenting symptoms of P.T.S.D. “It’s not about riding,” says Robert, “it’s about connecting soul to soul with another living animal that senses your pain.” The rapport that he has with the animals he cares for cannot be duplicated by a counseling session—“I trust the horse, and the horse trusts me.” It is this same intimacy that has not only become a crucial part of his symptomatic management, but has also made a profound change upon his life’s direction. In recognizing the healing capacity of his work with horses, the retired Navy SEAL has become an adamant supporter of equine therapy, suggesting that all veterans who are suffering—whether from P.T.S.D. or some other ailment—might benefit from including the relationship in their lives. Vivified by his new understanding, Robert is eager to tell others his story, trying to spread hope to those who feel that they may no longer have the ability to cope. He encourages everyone to find their own passion, look outward, and move forward. “Not every horse is meant to do everything,” says Robert, ”but every breathing, living horse has a purpose—every horse. There are no limits.”

About the author - A native New Englander, Tyler R. Vunk is a musician, ghostwriter, and national award-winning essayist. After receiving his B.A. in Music from Wheaton College in 1999, he worked as a musician for over ten years, playing and recording with various acts throughout Cape Cod and Boston. Although born and raised on the island of Martha’s Vineyard, Tyler currently resides in Southern Maine where he attends the University of New England, pursuing a dual degree comprised of both Neuroscience and English—an odd combination that, to his own surprise, actually encourages two of his favorite pastimes: learning new things and inventing inappropriate mnemonics.

Be sure to see selections from our Portraits of Pain series “Heal/Tell” at the Biddeford arts organization Engine, at 265 Main Street in downtown Biddeford. The Heal/Tell portion of the exhibit will run through April 2nd.

My story is multiple folds. The most recent chapter is about intestinal discomfort. It’s a very odd intestine, with a real big kink—it’s always partially obstructed. I had several intestinal obstructions over the past few years—a mishap after a laparoscopic surgery 11 years ago, which left me fighting for my life. My intestine surgery was one event, and a lot of things went bad. My gut is adhered down by scar tissue. Matted down. I’ve traveled through a maze of medicine.

Had they put one suture in the opening I don’t think I would have had intestines herniate up and go gangrenous. According to standards of practice this was acceptable in the way they close the surgery opening and my doctor not ever seen this complication. I asked her to go back to her team and present my case and ask that they think about how one suture could’ve changed my life. But I’m not sure it has changed their standards. She doesn’t know to the degree my life has been impacted. One suture could’ve changed the outcome and I could not be miserable after I eat.

The system can support us by doing really good communication between providers. The IV pharmacy has been integral in my ability to stay out of the hospital with home infusions to maintain my hydration. It means I am more in the driver’s seat. Illness manages chunks of my life but I’m still managing the rest, I’m not depressed, I’m not withdrawn, I’m engaged in my life and stay active. Last night I went to friends for dinner, and knew I needed to be home within two hours since my pain
usually starts then, I don’t ever forget that.

By getting a multi-disciplinary team who wants to support me, I have a job and I’m at home. I still get hunger, but I can’t think and feel bad at the same time so I don’t eat when I work. I might bring a popsicle to work—it’s a little bit of fluid and some sugar, which helps—it’s a way to stay focused. I work in a health care system and they understand. I still think I do a good job.

One of these days I’ll have an obstruction again, and I’ll have surgery. It’s a complicated surgery, and it could kill me—no one wants to touch it unless they have to.

I want to be engaged and I can’t be if I’m in pain. I try and use lots of methods to keep my pain in check. I have my dog and my heating pad, and I’m very good at distraction so I can deal with it most of the time.

Out of struggle you can have a positive effort. It’s a great to channel energy when I’m not feeling good into something creative and have something beautiful at the end of the pain.

Heal/Tell is a series of narrative and portraits by Cathy Plourde, Director of Add Verb Productions and Holly Haywood of the University of New England.

Please leave a comment – do you live with chronic pain? What helps you?

On Friday, March 8th, Your Brain on Art, An exhibition to promote brain awareness, brain safety and pain advocacy, opened at Engine, in Biddeford, Maine.

The works of more than 10 artists were on display, including prints (see right) from the Heal/Tell series by Cathy Plourde of Add Verb Productions and Holly Haywood, of UNE. See individual portraits from this series in earlier blog posts featuring the narratives of Kate, and Sue.
UNE Professor of Art Sarah Gorham’s work (background, below) is an interpretation of her father’s brain cancer. Hear her talk about it in this brief interview Neuroscience meets art in Biddeford exhibit.

In the image to the right, in the foreground, The Memory Neuron, is the brainchild of Tammy Ackerman of Engine, and UNE Senior Neuroscience major Lindsay St Louis. Shannon O’Connor and Kyle DiMare, students at the Maine College of Art were commissioned to create the sculpture – envisioned as a way to “engage the community through artistic expressions and create awareness to the many people who have been impacted by brain injury or illness.”* The public are invited to leave messages on the neuron to/for those who have been affected by brain injury or chronic pain.

In the background, paintings by Karen Musick, a self taught artist from Kerrville, Texas whose Musickscapes map the “landscape of her mind”* as a way to deal with issues involving medical negligence and chronic pain. Musick will be visiting UNE for the 11th Annual Interprofessional Spring Symposium on April 4th, and will participate in an artist’s panel (PAINting: artistic insights into the lives of chronic pain patients, 1:15 p.m. Harold Alfond Forum 231) to talk about her work and its relationship to pain.

As seen below, other artists include Jon Sarkin, a prolific artist whose artistic journey changed profoundly after a medical procedure that left him deaf in one ear, with splintered vision and difficulty balancing. Unable to see the world as a whole, and unable to ignore its infinite detail, his brain tries to make sense of what it perceives, and through his art, he tries to make sense of the faulty information he receives.

Jenn Shifflett lives and works in California, her painting Fire (seen below), has been the cornerstone image for the upcoming Symposium. She lives with Neurofibromatosis type 2, and a select few pieces from her large body of works are based on MRI films which were made during efforts to locate and treat her pain. When created, her “internal landscape” paintings, became a “means…to transform and find meaning in what cannot otherwise be healed through conventional medicine.”*

Nancy Andrews, whose work (seen below) combines storytelling, documentary, animation, puppetry, and research. Some of her research is into her own experience following profound delirium as a patient in an ICU after extensive surgery. She knows she got very good care during her hospitalization, but also knows that the aftereffects for her might have been avoided, and has made it her mission to “help patients, family members, and caregivers to identify post-ICU conditions and get help for these, when they occur.”*

Many thanks to Ed Bilsky, Tammy Ackerman and Lindsay St. Louis for all their work on this show – which will be open through the 6th of April.

Our friends at the Biddeford arts organization Engine, in collaboration with the University of New England’s Center for Excellence in the Neurosciences, will host an opening reception for “Your Brain on Art” on Friday, March 8 from 5:00 p.m. to 8:00 p.m. at Engine’s gallery space at 265 Main Street in downtown Biddeford.

Artist Jon Sarkin

“Your Brain on Art” features award-winning artists who have been impacted by brain injury, trauma or chronic pain including Jon Sarkin, Nancy Andrews, Karen Musick, and Jenn Shifflett.

"Fire" Jenn Shifflet

University of New England art professor Sarah Gorham will exhibit work portraying her and her father’s journey following his diagnosis of a malignant brain tumor and his ultimate passing because of the cancer. Add Verb Productions Director, Playwright Cathy Plourde, and UNE’s Holly Haywood will show large format photographs from their Heal/Tell series (which are also featured on this blog).

"Kate" by Holly Haywood

The exhibit will also include contributions from artists of all ages, including local school children and students from colleges and universities in the area. The Maine College of Art will exhibit the 10’ tall stainless steel “Memory Neuron” and local middle school students will display their interpretive drawings. Dr. Moses Chao, the former president of the Society for Neuroscience, will be an honored guest at the public opening. The exhibit coincides with the national Brain Awareness Week March 11-17 and will involve other activities and events including:

Wednesday, March 13, 6pm: “From the Studio to the Treatment Room” Licensed clinical social worker Dick Tryon and artist Nora Tryon, demonstrate their work in art therapy.